I took Maria and Jon Felipe back to the neurologist in Sioux Falls yesterday. It made for an early morning as we needed to leave here at 6:30 a.m. to make it to our appointment on time. Thankfully, Colin came with me to help. That way I could focus on what the doctor was telling me about each child while Colin hung out with the other one in the waiting area.
JF is still having several seizures a month so we are going to try increasing his medication again. We will have to have blood work done in a couple weeks to monitor the levels in his system since we are on the high end of dosing for this drug. (It will take a couple weeks to increase to the target dosage.) If this doesn't work, we will have to consider other medications, something I don't really want to do for many reasons.
Maria is more complicated, as usual. We have seen a real decline in her strength. We were told to expect this with the onset of puberty, but the doctor is still concerned. We are going to have an MRI done to check if her thymus has grown back any. She had her thymectomy done when she was quite young so this is a possibility. We have had other specialists also suggest that this should be done. Actually, this would be a easier fix than some of the other things that could be happening.
She also needs to have more blood work. This time the blood samples will be sent to Mayo Clinic for the work up. The doctor is looking for specific information on the type and levels of the problem antibodies so she can explore some other possibilities for targeting these specifically. There is also a possibility that because of the ongoing nature of Maria's struggles (most people with MG have periods of remission, but that hasn't happened for Maria so her system has been under constant attack for many years), she has developed myopathy. Honestly, I'm not really sure what that means exactly. I think it means there has been some long term damage.
Finally, Maria is going to go the neuromuscular clinic this summer. Our neurologist will be there as will several other specialists in neuromuscular diseases. We are all hoping that with many heads working on the problem, we will come up with some solutions to stop the backwards slide that she is in.
On a side note, she has filled out and when I took her shopping for clothes, things actually fit which was nice for her. Unfortunately, her muscles aren't really strong enough to support this extra weight, so we have to help her keep from gaining more weight until she grows taller. Those of you who know Maria know what a worrier she is and now she has one more thing to obsess about. Worrying about weight gain shouldn't happen at age 12.
JF is still having several seizures a month so we are going to try increasing his medication again. We will have to have blood work done in a couple weeks to monitor the levels in his system since we are on the high end of dosing for this drug. (It will take a couple weeks to increase to the target dosage.) If this doesn't work, we will have to consider other medications, something I don't really want to do for many reasons.
Maria is more complicated, as usual. We have seen a real decline in her strength. We were told to expect this with the onset of puberty, but the doctor is still concerned. We are going to have an MRI done to check if her thymus has grown back any. She had her thymectomy done when she was quite young so this is a possibility. We have had other specialists also suggest that this should be done. Actually, this would be a easier fix than some of the other things that could be happening.
She also needs to have more blood work. This time the blood samples will be sent to Mayo Clinic for the work up. The doctor is looking for specific information on the type and levels of the problem antibodies so she can explore some other possibilities for targeting these specifically. There is also a possibility that because of the ongoing nature of Maria's struggles (most people with MG have periods of remission, but that hasn't happened for Maria so her system has been under constant attack for many years), she has developed myopathy. Honestly, I'm not really sure what that means exactly. I think it means there has been some long term damage.
Finally, Maria is going to go the neuromuscular clinic this summer. Our neurologist will be there as will several other specialists in neuromuscular diseases. We are all hoping that with many heads working on the problem, we will come up with some solutions to stop the backwards slide that she is in.
On a side note, she has filled out and when I took her shopping for clothes, things actually fit which was nice for her. Unfortunately, her muscles aren't really strong enough to support this extra weight, so we have to help her keep from gaining more weight until she grows taller. Those of you who know Maria know what a worrier she is and now she has one more thing to obsess about. Worrying about weight gain shouldn't happen at age 12.
She looks so good filled out! Hope they find a solution to the weakness; make sure all the different docs talk to each other (as I know you will). I love those kids, so keep us posted!
ReplyDeleteGlad to hear the doctor has some ideas about Maria and maybe those talking heads this summer will work something out. I like seeing how she has filled out and love the pictures of all of you.
ReplyDeleteThanks for the update and the pictures- glad to hear that Mayo can now take a look at things for Maria. As it has gotten nicer and nicer outside we have thought more and more of all of you. It's boring and quiet on Fairhill Court lately... We really miss you in the neighborhood (I don't want to make you feel sad, just want you to know you are all missed). =) Kris
ReplyDeletep.s.I gather the house is settled since the sign came down? Or maybe it's just down because he mowed....
I'm sorry you heard complicated news about Maria and I really hope that Jon Felipe's seizures can be controlled with the new dosage of meds rather than needing to switch to something different.
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